Sarah has just starting reaching out for me. Of course, she’s reached up and for me for a long time. But I mean really reaching out – like in the sense of, “I care about you.” Or in the sense of, “I really want to get close to you.” It’s not quite a hug. And it’s not needy. It’s more of a scramble into my body with her little arms and legs saying, “Let’s get closer.”

And I love it!

I especially love the juxtaposition of it against the lack of reaching out by Catherine. Catherine melts into my body. It’s very close and intimate. But there is no pulling and tightening toward me, so honestly, it feels a bit void. Catherine’s hugs are ones I place there. Sarah’s come of her own will. I know Catherine would hug me if she could. And one day, I hope she will. Today, I’m thankful for what I feel from Sarah.

I’ve been reading a free copy of Exceptional Parent, a magazine for the parents of special needs kids. It’s quite impressive. The articles are well researched and documented, and they provide deep looks into the lives of living with a kid with disabilities.

An article in the June, 2009 issue titled, “The Basics of How to Reveal Epilepsy” by Robert J. Mittan, PhD caught my eye. Catherine has epilepsy. We typically refer to it as a seizure disorder, but it’s the same thing – epilepsy. I’ve usually just told people she has it. Never thought about the care I should take in divulging that piece of her medical history. Never thought about the fear others might experience wondering if she’ll have a seizure in their presence. Maybe I should rethink it. Maybe not.

A paragraph early in the article really struck me:

When you talk about your epilepsy or your child’s epilepsy, never blame the other person for their misconceptions or ignorance. No one chooses to be ignorant, and we all like to take pride in our own intelligence. If you somehow suggest that the other person is ignorant, you will be insulting them and their intelligence. There is no quicker way to get them to stop listening and learning from what you have to say. All they are truly showing is their cultural training and the fact that they have not yet had the opportunity to begin thinking about epilepsy for themselves. Give them respect and room to start thinking for themselves.

This strikes me as something we should all do regardless of the situation. If we consider the cultural background of a situation rather than the “rightness” or “wrongness” of it, many things lose their stressful significance. If we just consider that someone hasn’t yet been exposed to this experience as part of their culture, we become more patient and open to explaining our views.

Brian and I have backpacked around the world. Thankfully, we opted to do this before kids, and I think it’s one of the reasons I’m able to accept our road in life – I got to do my lifelong dream already. We spent hours asking questions of people we met seeking to learn more about their culture and seeking to understand them better. And we spent hours explaining the US and how and why it works (or sometimes doesn’t, frankly) in our country. We exchanged this information in an open environment motivated by curiousity – not judgment, not fear, not justification. We just sought to understand each other’s ways a bit more.

Frankly, I would rather someone ask me questions about Catherine (most days) than just stare from afar. I hadn’t yet thought of our life as one of a different culture, but I like that imagery. We each have lives of a different culture. Maybe we can approach each other like that.

I’ve been thinking of doing it for some time, but today is the day. Sarah and Catherine are napping, and though there are bills to pay and cleaning to be done, I’ve decided to see what happens. And why now? Because there are allergies.

Catherine has allergies. Not just a few, either. NINE. And not just to a small degree. MAJOR! Let me see if I can even remember them all. She’s allergic to milk, soy, beef, pork, egg, peanuts, shellfish… nope, I can’t even remember them all. This entire weekend, I’ve kept grilling myself. I’ve not remembered them all even once. So, how the heck am I supposed to keep her safe from them if I can’t even remember them?

I remember the two she’s not allergic to – corn and strawberries. Thank God for something, right?

So, it’s not enough that we have to deal with a medically prescribed diet to control her seizures. Now, she’s allergic to the main ingredient in that diet – milk! But she’s been on the ketogenic diet for more than 3 years. How can she be allergic to milk now?

I hope our nutritionist and allergist can figure it out, that’s for sure.

So, as I’ve thought about this, I’ve replayed a conversation I had with a friend on Friday when I learned this news:

You know, I remember one of our NICU nurses saying, ‘Wow, I wish y’all could catch a break.’ I remember thinking, “We did, she lived.” But now I find myself really, really, really wishing we could catch a break. It sorta sucks, ya know?

All weekend, I’ve thought about that conversation. Even with the allergies, we’ve caught so many breaks. Catherine is at Delrey for the summer. We’re paying for her tuition in the hopes they’ll be able to help and she’ll show progress that will indicate the county is not an appropriate place for her education. We have a full schedule of nurses at night. I’m employed. Brian is an amazing Dad. Sarah laughs. We’ve caught more breaks than many. And Catherine is still alive – and growing and learning to do new things like push a switch with her foot.

So, like the title I chose for this blog, we’ll just have to wait and see about these allergies….

Hi, I’m Ellen

I’m just a mom making my way, but my way is a little different. And yet, very much the same. I have a 13-year-old daughter, Catherine, who was born at 25 weeks and weighed one pound, nine ounces. Despite a very severe brain bleed, she lived and inspires me every day with all she works so hard to do... Read More…